Painfully Optomistic https://painfullyoptomistic.com
Living A Life With Chronic PainThu, 07 May 2020 16:59:10 +0000en-US
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1 https://wordpress.org/?v=5.4.117581874Are YOU Hanging On By your Fingertips?https://painfullyoptomistic.com/archives/8229
Thu, 07 May 2020 16:59:09 +0000https://painfullyoptomistic.com/?p=8229

Since I started writing a personal update a few weeks ago, the situation that our world faces has prompted me to start a fresh post! A few shorts weeks ago (well about six!!!) it was pretty much life as normal. Now we are isolating ourselves in our homes and trying to stop the spread of COVID-19 that has quite literally changed the face of our world as we know it. After finishing a post that would have given you an update on what my health is like I decided to change direction. To talk about “my situation” when thousands are dying, and people around the world are scared and trying to understand what all this means for our world didn’t seem right. What did seem right however the more I thought about it, was bringing a message of faith and hope!

At the moment there is so much fear and anxiety in our world. Something that I have come to know and understand myself very well. Through my own health issues over the last fourteen years, fear has been one of those things that I’ve had to deal with on a number of occasions. Prayer and having God as the foundation in my life has been the best weapon against that. As I started to put together what this message was going to look like in my head. Right away, what came to mind was the fear and all the uncertainty that I had to deal with in my own journey.

At the time of writing this about 267,000 people having died, and almost 3.8 million people have been diagnosed around the globe. Never have we needed to press into God more than we do now! This is so much bigger than anything anyone could ever handle on their own. However, I’m ever so blessed to have a God who can provide for our every need. When I was first diagnosed with CRPS, I remember the intense feelings of fear that I had to deal with. As my journey began to try and find answers, I continued to stand in faith pushing in deeper with God. Not questioning why things were happening but trusting that He knew the reasons and that with His guidance I could get through any storm. More on that later!

I believe we are already seeing God show up in some really powerful ways. In a time like this when it seems as if there is only chaos and fear unfolding around us. Why not look at all the acts of humanity and compassion going on all around us through these challenging times. I’m reminded of the scenes we see coming from places like Italy. Where citizens are taking to their balconies during isolation, singing patriotic songs and lifting each others spirits. What we’re seeing more than anything however, is the massive showing of support for all the front line workers. Those who are quiet literally putting their lives on the line, to make sure we are provided with the essential services we need.

I am even more overwhelmed by the acts of kindness that are going on right here in my own city! As the global economy has hit difficult times, and people all around us are loosing their jobs. The local food bank is under tremendous strain. Yet somehow, our city still manages to raise $1,000,000 in one day to give them the financial support they needs. I love it when we see clear signs that God is at work! Simple acts like checking on your neighbors who may be at high risk of getting sick, and making sure that they have the things they need. These things are happening in communities everywhere. Even acts like buying a bag of groceries for that person who may have lost a job or is struggling financially are happening more and more often.

When I see different things like these happening I find it hard to believe that God isn’t hard at work. During times like these we need to set our eyes on God, and draw near to Him. Are you trying to do everything by yourself and feeling like you just can’t do it anymore? Are you in a place where you need to see God show up? As this pandemic has griped our world with so much fear and anxiety. I just can’t help but think about how some of these things being caused by COVID-19, have impacted me in my own journey with CRPS.

When I was first diagnosed with CRPS I had to deal with the fear caused by a disease largely unknown by those in the medical profession. At times I felt isolated and alone in trying to navigate my way through this diagnosis that nobody knew. In trying to do that though, I learnt that the fear and worries that this disease could create were so much bigger than I ever could have imagined. Things like my finances became a concern with me no longer being able to work. How were we going to manage? My emotional well-being was also being affected in different ways. What was my future going to look like? This was another question that I couldn’t get out of my head. Suddenly there were all these different fears and things that I could worry about coming at me from all directions.

All of a sudden the landscape of my world had changed overnight, and so many of those things causing fear or worry were out of my control. If I wanted to be able to navigate my way through everything, then I needed to make a few changes. I needed to make the decision to hand control of the entire situation over to God. Giving up control in those difficult situations isn’t always easy and it requires a lot of trust. At the same time the rewards that we reap if we do are great. He’s given me the confidence to face any situation without fear, and the wisdom to create a path through some very uncertain situations. Whether they be my physical health, finances, or my mental health fear doesn’t hold the control anymore.

As we walk through this pandemic, we all have different needs as things continue to unfold. Some have experienced the loss of a loved one, and others have lost jobs as a result of the global downturn. We are living amidst all kinds of uncertainty right now. Is all of this causing your world to implode? Are you scared and having a difficult time managing? Then I only have three words for you. Turn to God! You will get through this. What we need to do is stand firm in faith!

“The goal of faith isn’t to take away your fears but to leverage those fears to create bolder belief. Faith leads you past your fears and reassures you of God’s presence. And after a while, you begin to trust that God is going to lift you above the waves this time just like he did last time.”

— Steven Furtick

As I wrap things up I wanted to leave you with this quotes by Steven Furtick. Everything he’s saying in regards to faith I absolutely believe to be true. As my faith has grown and developed, I’ve been able to move past the fear and like he says leverage it. My trust that God will show up in these situations or storms has grown in so many ways. You may have noticed that my experiences have been very much like what he’s talking about when it comes to fear and faith. In my opinion this validates what he’s trying to say saying. I’m not going to tell you what or what not to believe. However I’ve experienced too much within my own journey to believe anything else! With that I say be encouraged by the words I’ve shared with you in this piece and never lose hope!

Self-Advocacy is….

The dictionary defines self-advocacy as the action of representing oneself or one’s views or interests. Expanding on this what it really means is learning how to speak up for yourself, make your own decisions, knowing your own rights and responsibilities, and how to get the information you need. There are slight variations in the definition depending on where you look but most are pretty close.

Why Is it Important

When your living with a chronic illness or rare disease being your own self-advocate can sometimes be necessary. If you don’t learn to speak up or obtain the information that you need, then it can turn into not getting the care that you need. Especially when you are diagnosed with a disease or illness that is rarer. There tends to be less the medical system can do in these cases, and so you need to be more assertive. I’m speaking purely from my point of view having been diagnosed with a rare disease. However, this speaks for pretty much anyone and should be a basic life skill.

Practicing Self-Advocacy

This can be the difference between getting the answers and care that you need and not. It really is this balancing act when it comes to how you advocate for yourself. If you find you aren’t getting answers then start asking questions and be direct, firm and polite. When something isn’t clear to you ask for clarification. At the same time, you need to be able to listen to and respect other points of view. We are all entitled to a basic level of health care. How we go about getting that level of care is important! Know what you’re talking about or the questions that you are asking. Have a strategy that you put into place in order to get what you want or need. Then, of course, have support through family, friends, and other patients/advocates.

Being Effective

There are a lot of ways that a person can be effective in advocating for themselves. I think one of the most powerful ways though is to believe in yourself. You are worth the effort that it takes to advocate for yourself and to be able to protect your rights. Setting clear goals for yourself will help you in being able to obtain what you want or need. Ultimately it comes down to you! Are you going to let others make decisions for you, or are you going to take control over the decisions that affect your life?

Self-Advocacy is a Lifeline

Whatever you do never give up! There are going to be times where things get hard and you face tough obstacles. Those are the times that you need to remember why you’re advocating for yourself. Keep at it and don’t be afraid to go after the things you want or need. Sometimes it’s going to take dedication, strength, and determination to get yourself the things you need. Not to mention a whole lot of God!

In Conclusion

Through my own personal journey, there have been times where all I’ve wanted to do is give up. The most obvious being the day I received my diagnosis. That day was a dark day! After almost a year and a half journey just to find a diagnosis I was told nothing else could be done. However, this is where being my own best advocate has helped me to obtain a quality of life that I wouldn’t otherwise have with CRPS.

I refused to believe that nothing could be done, and I started to do the research in order to obtain the knowledge I needed. Then with that knowledge, I started asking questions and we came up with a treatment plan. Things might not be perfect by any means because it’s a rare disease with little known about it. I fought for what we can do right now and I’m an active voice in my care and the decisions that we are making. That’s where the understanding on my part has to come in. There’s a limitation to what I can do at this point however and I have to respect those limits.

I leave you with this. When it comes to self-advocacy there are three things to remember and those are to know yourself, know your needs, and how to get those things that you need.

Merry Christmas everybody or should I be saying, Merry Christmas Eve. I wasn’t going to post a Christmas message this year. Then I decided that I couldn’t just let Christmas slip past without posting something. I love Christmas! Without a doubt, it’s my favourite time of the year. Our entire family gathers and spends time at our cottages on the lake. Our extended family is large and everyone comes home for the holidays. It really is special as we are a very close family.

Now as much as I love Christmas that doesn’t mean that it doesn’t come without its challenges. As well as being the season that I love the most it can also be one of the hardest times of the year for me. It becomes this balancing act of trying not to let my symptoms get worse and at the same time enjoy the time spent with my family. I wish I could say there’s a magic formula on how to do this but there isn’t.

Stress is an enemy to my body at this time of the year. Actually it’s my enemy all the time! So I do my best to keep it at a minimum however I might need to make that happen. This is the case with so many of us who live with chronic illness. With all of the visiting, parties, shopping, and everything else Christmas self-care becomes really important. This being said everyone’s way of managing those stresses is going to look a little different.

Although it’s this balancing act that I have to manage there are two things that get me through more than anything else. Family and all the support they give me is one. They understand the difficulties that I face at this time of the year. They also understand and accept all the ways that I have to adapt things in order to manage my way through Christmas. Without this type of support and acceptance, it would make it so much more difficult for me.

My faith, however, is the most important piece in all of this. I can’t speak for anyone other than myself. Without my faith, all of this is so much harder to navigate. So Christmas is all the more meaningful to me because I focus on why we celebrate at this time of the year. Knowing that I don’t have to fight this battle on my own makes it so much easier to keep going.

I’m not saying that I don’t have moments in this season when things can be hard. What I am saying however is that I’m choosing to focus on some really positive parts of my life that make this time of the year great. What are you choosing?

Nobody said that running that marathon that you signed up for was going to be easy! As you hit the halfway mark your body begins to give you all the different signs that it’s being pushed to its very limits. Your legs begin to cramp and get sore, and your heart and lungs pick up speed in trying to supply your body with the oxygen that it needs. The more you train and prepare your body the less these things will affect you. Ok! So I’m sounding like some type of an expert! I’ve only ever run one so-called marathon in my life and that was a 10k when I was 16. Does that even qualify as a marathon? Lol! I hadn’t prepared at all for the run, and being the (know it all teenager I was), I drank two raw eggs figuring that would give my body the energy it needed.

So how is living with chronic illness compared to that of a marathoner? The relationship is through how you prepare mentally and physically. This might seem like a strange comparison but hopefully, I can outline things well enough that you can see the point I’m trying to make. The more I started comparing the two, the more I started to see similarities between running a marathon and living with a chronic illness. My hope is that you to see the comparison, and in some way take away pieces of it that might help in your own journey.

There are a lot of different ways that a marathon runner prepares for or even runs the race itself. There are three however that I really want to concentrate on in this piece today. Those are incorporating mindfulness strategies, finding a distraction, and building a support network. All three of these areas cross over from running into the world of chronic illness that we live in.

Incorporating Mindfulness

A runner practices what is called mindful running. This is where they connect their breath to their bodies. Don’t ask me about the mechanics involved with this! Although I think I can pretty much figure that out. Lol! When the two are combined performance is increased, injuries are prevented, and the experience of running is enjoyed more. How anyone can find running enjoyable I’ll never understand!!!

So when it comes to chronic illness this same concept of connecting breath to the body is used just for different reasons. In managing my chronic illness I apply mindfulness strategies such as breathing and biofeedback to help manage my symptoms and my pain. These breathing exercises help to regulate my nervous system which is a big part of the problem. They help me decrease flare-ups and help me balance out the other symptoms. In other words, like the runner who’s performance is bettered when they to use breathing techniques my quality of life gets better when I’m using them.

Finding Distractions

As I mentioned before I don’t have any experience as a runner and probably never will because of my CRPS. However, you don’t have to be all that smart to figure out that there can be physical pain associated with running. Most runners will tell you that they have to find ways to distract themselves from intense physical pain. After doing some research I discovered a runner who encourages his athletes to play a game called “One Shirt at a Time”. The basic idea of the game is to look out in front of you, find a line of runners, and count them. Then you start reeling them in or passing them “one shirt at a time”.

Just like a runner who suffers from physical pain, a person living with CRPS has to manage intense chronic pain. So you need to find ways to distract yourself so that you don’t focus on the pain. This is just another tool in my toolkit that helps me manage chronic illness. For me, that means getting absorbed in a hobby like photography. My love for photography helps me take focus away from the constant pain and try and direct it somewhere else. It doesn’t mean that I will be pain-free. The point is that this is all about mental attitude and the ability to take your mind off of the pain.

Building A Support Network

In both running and living with CRPS building a support network is important. When a person runs a marathon often they have friends and family to help them along the way. They might even be from within the running community that they may belong to. They place themselves at various places along the route and of course, show up at the finish line. The support along the way is a constant encouragement and can be the motivation that a person might need to get them through difficult times or just simply to the end of the marathon.

Like a runner, a person living with CRPS has to build a network of supporters as well. Again, this might be through family, friends, or through the chronic illness community. Even though the support might be shown in a very different way, the principles of encouraging and motivating stay the same. This is yet another tool that is vital if I am going to manage my illness. Whether its support from family or an online community of some type. That help becomes an important part of getting me through those hard moments when things seem next to impossible.

In Conclusion

Taking on an illness such as CRPS can very much feel like your running a marathon. There are times where you wonder if you will ever get to the end of the race. Both physically and mentally you push your body to its very limit just as a runner does. As you get further and further down the road on your run your body begins to tire, and your urge to give in can get so much stronger. Using these three simple tools help me keep placing one foot in front of the other. Am I going to reach the end of the marathon? There isn’t a doubt in my mind!

Hi all! Chronic illness decided that it was going to unleash its fury on me for the past few months. So I ended up taking a break with my writing. Along with other things medications have made writing difficult for me. So instead of adding more stress into the mix, I decided just to take a little time away. Now its time to get back at it!

I don’t have any awe-inspiring messages for you. Although I wish there was! Lol! If I can manage to put something together that has any form of a message at all then I’m doing really well. My writing isn’t on the NY Times Best Selling list and it probably never will be. I write for the simple reason that it helps me express everything that I’ve had to walk through on this journey. Most of all, however, it allows me to share with so many of you who might be on a similar journey.

Okay! So the sharing side of things has been lacking a little lately. Taking care of “me” has to be the priority right now though. That might mean that I have to step back every so often when things get difficult. Things haven’t been easy over the last couple of months. The word “complex” would be an excellent choice of words to describe my health right now. So much so that there are days that I just want to wave the white towel in surrender. Although I refuse to ever do that!

Some days I just wish I was off on my dream vacation to Bora Bora! Relaxing in my glass-bottom hut watching all the fish swim underneath. Unfortunately, the closest that I’ll get to tropical fish swimming right now is one of those large fish tanks they often have in the waiting rooms of Dr’s offices. Lol! It is ok for a person to dream, isn’t it? With everything that’s going on right now, sometimes my mind just needs to escape and go to its happy place.

As I mentioned, things have become more complex with my health since May. Honestly, it has caused me to struggle a bit at times. Is it all related to my CRPS? At this point, I really can’t say because I’m still trying to figure out the new issues that I’m dealing without. So that will be an update for another time. Right now I’m feeling frustrated and run down by all the waiting and the lack of answers. In the meantime, I try to stay hopeful that those answers will come soon.

At times like these when emotions can get out of check. It’s a good time to stop for a second and take a look at the things that are going on inside. Kind of like when you take your car in for its regular yearly checkup! You have them check the oil, top-up fluids, and do any regular maintenance. With all of that, however, the mechanic goes a little bit further with the things he’s checking on. On the outside, everything might appear to be working fine. Until he digs a little bit deeper into the engine where they sometimes find those hard to diagnose problems.

Checking on how I’m doing emotionally is something that I know I can do a better job with. I have to be honest. Sometimes it’s just easier to push my emotions aside and say I’ll deal with everything later. Except for the fact that I often forget about the later part. Then I find things can build up over time and those small issues become a little bit bigger. In an effort to head that off today, I’m trying to deal with my emotions and tell you that I’ve been really frustrated lately. It would just be so easy if there was a switch to turn off all the negative thoughts that start invading a person’s mind when we go through things like these.

It’s like there’s this intense chess match going on in my head between positive and negative. All I can do is hand everything over to God. On more than one occasion He’s helped me get through some pretty tough times. Once again this is another area that I could do a better job with. I know that I can put my trust in God’s hands to help me with anything! However, sometimes the things going on around me cause me to get distracted and I forget to have that simple conversation with Him. It isn’t difficult! Yet we get so caught up in the day to day that we forget or make excuses for why we don’t.

Slowing myself down for a minute and grounding myself in what I know is true and can help me the most is what I need right now. If there’s any message at all its that I need to have that conversation with God and to ask Him to help me with any of the frustration that I might be having a hard time with. I know this post doesn’t have a lot to it but I’m just taking the opportunity to share with all of you how I’m feeling inside. A simple message is sometimes the best!

Trying to figure out today what exactly I wanted to write and put up hasn’t been easy. Its been a while since my last post but for good reason. The last couple of weeks have been tough, and have really challenged me mentally. So do I put up the one that speaks towards the conference in Dallas, TX that I was just at a month ago? Or do I speak towards the last two weeks that haven’t been easy for me and the rest of my family? I’ve decided that it’s going to be the later of the two. Honestly, it really speaks towards what’s on my heart right now.

Over the thirteen years that I’ve battled CRPS, resilience is something that I have become far too familiar with. I’m saying this because this past week or two haven’t been very easy. Once again I have been dealing with more health-related issues. No surprise when you deal with an autoimmune! This week I’ve found myself having to go into some form of superhero mode just to get through the day. Honestly, there really are times when I wonder if I possess superhuman qualities. Lol! Sometimes in dealing with my health, it really feels this way. The question is which superhero’s would those be?

The most obvious would be the classic American superhero Superman who uses his superhuman strength to fight crime. The only difference is that I use my superhuman strength to fight sickness. If you have ever read any of the comic books or seen any of the movies, then you might be familiar with his constant war on crime to defeat evil villains like Lex Luther. This arch nemesis of his is always creating a constant path of crime for Superman to fight. The parallel that I’m trying to make is that he uses his strength to fight crime, and I use my strength to defeat CRPS.

Actually, if you really think about it I guess you could say that there would be qualities from several different superheroes that one has to have in order to battle a disease like CRPS. There are a few that really stick out though and come to the front of my mind. I think about ones such as “Thor” who possesses this great superhuman strength, endurance, and stamina. All of which a person needs when they are fighting an illness of this scale. As each of us walks through our individual journey’s there are going to be trials that we come up against. In order to get through those times of adversity, there is no question that I have needed strength, endurance, and stamina.

Then there are the traits of the “Hulk” who possesses the greatest raw strength of any natural being on earth, and skin that can resist damage from heavy weaponry. There are going to be times that you have to go into “beast mode” when facing some of these difficult situations that you come up against. Meaning that you will need this combination of pure physical strength on one hand, and on the other a thick skin to minimize the damage that can be caused by the constant ups and downs of fighting a chronic illness.

I could make reference after reference to different superheroes (actually I couldn’t because my knowledge on superheroes is very limited) but I think you get the basic message that I’m trying to get across. Being sick sucks, and when things get bad you have to find a whole new level in order to keep the fight in you going. That means that what’s important is being able to find your inner superhero. As most of you know my faith in God is that superhero. What is yours?

There’s no real powerful message in today’s post. I’m just speaking from the heart at a time when I need to stay positive and fight through another issue with my health. This is when your mental and physical health is going to be challenged and it wears you down but you can’t give up. You need to put on your armour and go on the offensive. Pull out all the weapons that you need, and go into whatever challenges you might be facing with the attitude that you will come out on top.

As I bring things to a close today I want to leave you with this to encourage and support you. As individuals who are fighting through a chronic illness or rare disease we are: resilient, courageous, survivors, passionate, strong, empowered, self-determined, brave, hopeful, motivated, resourceful, optimistic, and patient. When the fight gets difficult I remember that I have all of these within me and so do you!

One of the terms that you will commonly hear a person living with a chronic health condition refer to is “brain fog”. I wanted to write something about this today because there’s often a misunderstanding about what it all involves. Brain fog isn’t a medical condition itself rather its a symptom of other medical conditions. Now to be clear I am not a physician so anything I’m writing here is my person opinion or research that I have done to educate myself.

I guess one of the reason’s that I wanted to write about “brain fog” was to give people a better understanding of all the different ways that one can be affected. With a disease like CRPS I am constantly adjusting medications according to the pain levels that I deal with. So yes! Medications are definitely are a common cause of brain fog but not the only cause. I think people naturally gravitate toward thinking that the only causes are medications but there’s a lot more to it than that.

The most common causes of “brain fog” are stress, lack of sleep, hormonal changes, diet, medications, and medical conditions. So when you ask a person living with a chronic illness if they suffer from brain fog the answer is usually more often than not going to be yes. If you look at all these different causes most of us living with chronic illness can tick a lot of the boxes when it comes to different causes. For me personally when it comes to medications I take neuropathic agents such as gabapentin and amitriptyline, and I am more prone to having episodes of fogginess in my mind. Then there are also the opiates that I take which are also known to reduce mental clarity as well. So constant changes like mine can often make it worse if I’m requiring higher doses.

When it comes to medical conditions, ones like autoimmune diseases, depression, migraines, and hypothyroidism are just a few that can cause periods of cloudiness. These different medical conditions themselves often have symptoms which are some of the other causes. Five out of the six conditions I listed have symptoms that are causes of brain fog.

So can we get rid of brain fog? I’ll leave that answer to the experts but there are definitely things we can do in order to reduce the symptoms. The two easiest changes that we can make in my opinion are diet and sleep. When you look at diet there are a few ways that you can adjust things in order to minimize brain fog. Making sure that you are getting foods high in B-12 is important because it supports healthy brain function. If you suffer from food allergies or sensitivities then avoiding foods with MSG, aspartame, and dairy can be a good idea because those can be triggers.

Sleep is pretty self-explanatory in that without the proper rest our brain function is naturally not as good. We need about 8-9 hrs per night. This can be really difficult for someone with a chronic illness at the best of times. If I’m lucky on a good night I get about 3-4hrs so it can make the brain fog bad. If I take naps however I can certainly reduce the number of symptoms that I deal with. I try and adapt healthy sleeping habits the best I can, that means trying to sleep even though my body may not want me to. Staying in a restful state at least gives my body a fighting chance at getting the rest it needs.

Another cause of brain fog is stress. Chronic stress can raise blood pressure, weaken the immune system and trigger depression. Eventually, your brain reaches the point where its just exhausted and it becomes difficult to think, reason, and even focus. Those of us who live with chronic illnesses know all too well what I’m talking about! So finding a way to reduce stress in your life when your living with a chronic illness becomes very important. The practicing of yoga or meditation tends to be two of the more popular ways for people living with chronic illness to do that.

There are so many different reasons that individuals suffer from brain fog when it comes to chronic illness. Yet the first one that comes to mind for so many is medication. Why is that? Is there a stigma built up around it? Clearly, medication does play a role but so do a lot of other things. When you look at the different causes of brain fog, you can see that often those affected by a chronic illness suffer from one or more of those causes. In a lot of ways, I can relate it to that of an ecosystem. When just one thing gets thrown out of balance within an ecosystem then it throws off the entire balance of that ecosystem. The same thing can happen when it comes to our brain and its cognitive function.

So as you can see from how I have explained things in this post, managing our chronic illness is important even if it’s for this one reason alone. We may not be able to stop all of the symptoms from happening but we do have the ability to try and reduce their effects. I hope that by explaining this the way that I have that it brings a bit more clarity to the picture. Medication is but one part of a bigger pict when it comes to brain fog. In the last few years, I’ve tried to make significant changes to my self-care and I can honestly say that it has helped. Periods of fogginess are less frequent and not as bad as they once were. I’m sure to some extent because I live with an autoimmune disease that I will always have to battle brain fog to some degree. I can however try and do everything I can to help reduce those symptoms.

As most of you know from my post a month or so ago, that I have been fighting through some increased pain. To say it’s been testing me in every way that it possibly could is an understatement. Would you believe that I’ve written this piece three times, and every time I am stopped by a mental block of some type. So once again CRPS has decided that it was going to rear its ugly head like only it knows how to do, forcing me to wage a war against it as always.

Back in October I battled through one of the worst flare ups I’ve had in probably ten years. The pain quickly intensified and soon I would find myself headed to the ER, unable to control things any longer without help. Certainly a harsh reminder of how this rare disease can unleash an attack at any moment. Always waiting for an opportunity to defeat you!

Living with a rare disease you go through some days and nights that are going to be the fight of your life. This particular evening was no exception. The battles are never easy to navigate through and difficult for the entire family. However we know that with each situation that we face that God arms us with a strength and power from within. It isn’t a question of if we will win but when we will win this war.

On nights like these naturally your mind becomes filled with thoughts of fear, doubt, anger, sadness, and a host of other emotions. If you know me at all through this blog though, then you know that this is where I begin to speak out through prayer. We pray for peace of mind, wisdom for the physicians, strength and above all healing. Why! I guess because I’ve been through a lot of uncertain situations in the last thirteen years with CRPS, and over that time I’ve seen a lot of answer prayer during that time. This particular night was no exception.

First of all you have to understand where things were at up until that point of the night. When the pain got to be too much I asked my wife to take me to the hospital. Before leaving I said goodbye to my two girls whose strength through all of this reduced me to tears. Instead of being sad or upset by seeing their father in such pain they stayed strong and prayed over me. An answer to what I believe would be the first of three prayers this night.

When we walked in the doors of the hospital it seemed as if it was going to be one of those nights that too often those of us with rare disease face. With lack of education and understanding of CRPS you often come against obstacles within the medical community. Sure enough this is what we were met with upon arrival at the hospital. We spent the next few hours wondering if this was going to be how the entire night unfolded.

As we waited to see a doctor my wife and I tried to find humor in being laid across a bench at the entrance to emergency because I couldn’t stand or sit. She tried to find ways to make me laugh or ease my mind as we faced this difficult situation together. At a time where I should have been filled with fear and so much more inside there was a peace.

After finally being taken to a bed what happened next was what I believe to be another answer to prayer. Of all the ER physicians on shift I was seen by the one who was familiar with and knew the treatments related to CRPS. What you need to understand is that a lot of physicians don’t know much about the disease. She made some adjustments to my meds and ran a few other tests but above everything else my pain level was back at a manageable level.

Why out of all the physicians that were on staff that night did I get the one who had the knowledge on CRPS? Why didn’t fear consume my every thought that night? How is it that my family stays so strong through such trials? When we declare God’s word out loud then something very powerful happens. So I absolutely think that by doing this we had an answer to prayer. Looking back at things now it is very clear just how much God was doing through the course of the night.

Look! I’m not going to hold back in any of what I am trying to say. I only hope you understand what it is that I’m trying to say. We need to be bold and go after those things in our life or situations that we face. We do that by proclaiming the word of God over them. If we do that then we will see amazing things happen in our lives.

In my efforts to stay ahead of the game I’m back at it trying to keep up with the writing. Is it just me or did the Christmas season this year seem to really creep up on us? Today we have the Christmas music on in our house, as we busily work away decorating and putting up the tree. This has to be my favorite time of the year by far! When our kids finish school for the break we pack ourselves up and move out to our cottage at the lake. Christmas for us is all about spending time with our family. Its also a time to just slow the pace down and take care of myself.

There are so many “great” memories associated with this season for me both old and new. Everything from different family traditions to the amazing smells that fill our houses. I think to some degree we all turn into kids again at Christmas. We can’t wait to watch the classics like “Rudolph” or “Santa Claus is Coming To Town” with the family. It seems like just yesterday that I was listening to the radio reports of the Santa Tracker as we anticipated his arrival from the North Pole! There’s just something so crazy special about the build up leading up to Christmas morning whether your a child or not.

All of these memories with family that we are creating both past and present, help in a season that can sometimes be very difficult to get through. Most people don’t understand the affect that chronic illness has on a person around this time of the year. Pain levels increase and mental health can become a struggle creating challenges that individuals have to work themselves through. Sometimes I think those challenges that we face take center stage, and we forget about all the good things we still have in our lives. Family and all those special moments we spend together at Christmas are at the core of all that!

One Christmas that sticks out in particular involves my grandmother and a flaming roast. I was too young at the time to remember all the details but as story goes she was carrying Christmas dinner to the table which involved flaming brandy. She was getting older and so she wasn’t as steady anymore. As she walked to the table the tray tilted, causing flaming brandy to drip off onto the carpet. What I understand was that there was a trail of burn marks left behind what could have turned out to be much more serious. It seems like every year without fail, the story about my grandmother almost torching the house comes up!

Not all of the memories are as crazy as that one though. It was the simple things like having breakfast together as a family Christmas morning. Dad and one of my sisters would have a contest every year as to who could drag breakfast out the longest. Dad would take an hour sipping away at his coffee and my sister would take the same amount of time to eat a sausage or whatever the food of choice was.The rest of us would sit there waiting impatiently to get to the presents. Even something like having those Christmas crackers with the crazy little hats that you would wear at dinner were a must at our house. Why? Because it was a tradition and it wasn’t Christmas without them on the table.

As an adult I can’t help but laugh thinking about the good times spent over the holidays with my wife’s family. We would awake to my father in-law slowly turning up the song “White Christmas” at the crack of dawn! Every so often he would turn it up until we couldn’t take it anymore! The list of goes on and on but there are two common denominators with all of these great moments. They involve family and that they bring a smile to my face time and time again. Without a doubt things are a bit different these days but it doesn’t mean that everything about the Christmas season has to be bad.

The other thing I want you to think about is why we celebrate Christmas? The whole reason that we celebrate at this time of the year is because of the birth of Jesus! We get to remember the one gift that we so seriously need to be thankful for. Without Him I’m not the person I am today.

So I encourage you to look at things with a different perspective. One that focuses on the positive and the good things that surround you!

Hi everyone! I know its been a while since my last post and so I figured I better get something up. That’s if any of you are still reading this blog! Today is really just an update on what has been going on. In Sept things were busy with a couple of speaking engagements and a week-long trip to Ottawa involving advocacy work. While in Ottawa for that work an opportunity arose to speak with representatives from both the Liberal and Conservative Governments in regards to Bill C-81 the Accessible Canada Act. This was a real privilege to take part in and I had to ask a lot extra of myself in order to do it.

In October I started experiencing a really bad spike in pain which ended up with me making a visit to the hospital. I have managed to get the pain under control however am still dealing with some unanswered questions. Pushing forward and not wanting this setback to derail me, in mid Oct I was asked to speak at a conference in Montreal. I was given the opportunity to share my story with researchers from the Society for Medical Decision Making. Another opportunity that you don’t get every day, and one in which I got to share on behalf of the patient/advocate with researchers from across North America.

After sharing my story a researcher attending the conference pulled me aside. She told me that the highlight to her week was listening to my story, and that it opened her eyes to just how much rare disease affects an individual and their family. Then she thanked me for helping her to see things from a different perspective, and that this would change the way that she would do her research moving forward. At moments like these it doesn’t matter how many individuals are at the conference! Being able to impact just one person in the way that I did make it all worthwhile.

Arriving home from Montreal and with commitments out of the way I could now spend more time on self-care. A good thing because dealing with my health right now has to be my focus. At the moment I am undergoing different tests to figure out why my pain is spiking so much as of late. It all gets to be so much at times but you do your best to pull out anything positive you can. You will see in one of my next posts, that a great deal of positive can result from a these trials we face.

I’ve moved past the point of allowing anger, fear, or any of the negative that tries to creep in. In the thirteen years since diagnosis when it comes to research, treatments, or even cures there’s been very little changed with CRPS. Yet this tends to be where people fighting this disease get stuck and spin their wheels. People diagnosed get paralyzed in fear and start to feel helpless because of the uncertainty of so many different things.This is an area in my life where God has really broken down walls and not only fills me with hope but also helped me to keep moving forward with my life.

I’m not willing to let life pass me by! CRPS can throw everything it has at me but every time I’ll get up and fight stronger and harder never giving up. I guess in a lot of ways you can compare crps to the likes of learning how to ride a bike for the very first time. At times you are going to fall off, and so you dust yourself off and get right back on the bike.The hard part is in telling yourself to get back on. For me personally God is the one who lifts me back up every time I fall off, encouraging me to keep going and move forward with my life.

Like I said before there really is no message in today’s post. Although if you read between the lines maybe there is one I don’t know. What I will say is this. We know that as each of us walks through our own personal journey’s, that we might come up against some really tough situations. Right! It’s in my own personal opinion that we need to see them as opportunities to learn and grow from them. Even if that means not understanding the why’s of a given situation! God has really helped me to strengthen this area of my life. Empowering me to use those obstacles or tough times that I go through in a number of positive ways.

Not everything about this diagnosis has to be a bad thing. The person I have become as a result of being sick would require me to write an entire chapter of a book in order to explain. Yes chronic illness has radically changed my life along with the rest of my family. What I am choosing to see however are all the ways in which it has had a positive impact on my life!